Re: a man asked to see my legs?

[Guest guest]

I just say I had surgery. People seem a little disappointed it's not a more

interesting story, but that's good enough. A few people have jokingly said

things like " have a skateboard accident " .

I agree people you meet in passing don't want to hear about CMT, they're just

curious or trying to be polite.

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[Guest guest]

Wow what an excellent response .

Elaine 

From: Caroline Liu <@...>

Subject: Re: a man asked to see my legs?

Date: Tuesday, January 12, 2010, 8:32 PM

 

If other people are curious about my CMT, that is their own responsibility

to fix their own curiosity. I do not live to educate people. I live to enjoy

my life.

If I feel curious that why you have white skin color (my skin color is

yellow), I need to research this by myself. But I really have no interest to

know your skin color. You skin color has no relationship with my life. I am

yellow and I am enjoying my life.

I never ask other people stuff that they might not be willing to answer. For

example, I never ask my closed friend why she got divorce. My questions can

not help her life. It is called being considerate or respect the free will

of other people. If my friend want to share with me her divorce story, I am

willing to hear.

When I feel that I want to wear a skirt, I wear it. When I feel that I want

to wear pants, I wear it. It all depends on how I feel happy. If someone

wear a hat, it is his own free will and choice. I have no interest to ask

why he wear a hat.

I do not need anyone to accept me. My existence on this earth is already

very very significant.

It is all about being thoughtful and considerate. Be thoughtful about how

our behaviors might impact other people. Just like when I go to a library, I

choose to be quiet because I do not want to make other people in the library

feel uncomfortable. They have no obligation to be annoyed by my noisy

behavior. Other people deserve to have a high-quality space to feel

comfortable in their lives.

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[Guest guest]

I once said my feet had been cut off in a farming accident. I only said it once

because the person actually believed me. I felt bad for lying. lol

[Guest guest]

Wow. It is amazing what different viewpoints we have. This has been a really

interesting topic. I am really enjoying reading the different comments. I never

realized that curiosity could be so hurtful. Thank you for sharing.

>

> If other people are curious about my CMT, that is their own responsibility

> to fix their own curiosity. I do not live to educate people. I live to enjoy

> my life.

>

> If I feel curious that why you have white skin color (my skin color is

> yellow), I need to research this by myself. But I really have no interest to

> know your skin color. You skin color has no relationship with my life. I am

> yellow and I am enjoying my life.

>

> I never ask other people stuff that they might not be willing to answer. For

> example, I never ask my closed friend why she got divorce. My questions can

> not help her life. It is called being considerate or respect the free will

> of other people. If my friend want to share with me her divorce story, I am

> willing to hear.

>

> When I feel that I want to wear a skirt, I wear it. When I feel that I want

> to wear pants, I wear it. It all depends on how I feel happy. If someone

> wear a hat, it is his own free will and choice. I have no interest to ask

> why he wear a hat.

>

> I do not need anyone to accept me. My existence on this earth is already

> very very significant.

>

> It is all about being thoughtful and considerate. Be thoughtful about how

> our behaviors might impact other people. Just like when I go to a library, I

> choose to be quiet because I do not want to make other people in the library

> feel uncomfortable. They have no obligation to be annoyed by my noisy

> behavior. Other people deserve to have a high-quality space to feel

> comfortable in their lives.

>

>

>

>

>

>

> >

> >

> >

> >

> >

[Guest guest]

Years ago, after my second ankle surgery, when I had a 3/4 length cast on one

and a walking cast on the other, I got really tired of having to answer the

" What did you do to yourself? " question from strangers with an explanation about

surgery and CMT. I started telling people that is was a parachuting accident

where the chute malfunctioned and (sob) it was just too painful to talk about!

it was a surprisingly fun way to deal with the issue.

>

> I said the same thing after my surgery. I don't think people really care to

hear the long CMT explanation.

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> In a message dated 1/12/2010 5:01:05 P.M. Pacific Standard Time,

> lsacks.5101@... writes:

>

> I have had 2 foot surgeries this year. After the second foot surgeryI had the

boot on and one good foot. So when people asked what happened to me, I told them

I had a little skiing accident. I just had fun with it. Why not?

>

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[Guest guest]

If this had happened several years ago, I would have been horrified. It would

have felt horribly intrusive and it would have ripped the cover off of my

carefully crafted mask of denial of " nobody can really tell there is anything

wrong with me " . To have somebody ask to see my legs would have felt like having

somebody ask to see the most vulnerable and shameful secret I carried.

However, I am in a different place after a great deal of emotional healing. I

see curiosity as potentially a very good thing and would potentially be honored

that somebody would risk asking that question. So many able-bodied people are

discomforted by disability and think it is a taboo subject. (I say " potentially "

because it would depend on the circumstances. If a strange man on the street

asked that question, I would turn and run! It would all depend on the context,

on the level of relationship, and if I thought there would be good coming from

it.)

I see myself having alot of potential to help other people accept their own

places of bodily shame by showing that I accept and love my own former places of

shame. If I love and honor and take pride in my deformed legs, maybe that will

help somebody else change in the way they see their flabby thighs, big nose,

etc.

Lynna

> >

[Guest guest]

I too like try to make fun of someone asking about my walk by coming

up with a different answer every time someone asks.I was attacked by a wild

goose at the park.I was bitten by a TSETSE FLY.sometimes an outrageous

answer will make the person asking realize that they are asking a personal

question.

Geoff in Phoenix AZ

[Guest guest]

Over the years I have noticed that (usually) those of us that grew up

having CMT react differently when asked " what is wrong " then those that get it

later. I am sure it is due to being teased and harassed in school. By the time

high school starts we have seen and heard every mean thing that can be aid and

we are ready to keep our business to ourselves.

[Guest guest]

Sometimes I see people who walk rather funny (not CMTers) and I wonder if they

get asked too.  Then sometimes I see the woman (especially at the mall) wearing

high heels and boy some of them walk funny in those shoes!

Yesterday my daughter and I were at a stop light and a man was walking across

the street in the cross walk in front of us and he obviously had CMT or some

similar condition.  I said " Look, he has CMT " and I thought how odd it was like

a was recognizing an alien from my home planet! LOL 

Cyndi

[Guest guest]

I would like to respond to the " shame " .

I shared something about shame in previous posts. I went through emotional

healing to deal with the shame. After the healing, I become clearly know who

I am.

I don't answer questions that I don't feel happy to answer. A considerate

person would be thoughtful about my feeling and free will regarding what I

want to say and what I do not want to say.

Different people have different vulnerable points. For example, if my friend

cares about her weight, I will not ask her weight. If my male friend is

short, I will not ask why he can't grow up more. If somone is ugly, I will

not suggest her/his to have a nose surgery.

This is also about " boundary:.

Now, when people ask me, I just have no response. Keep quiet. If I feel that

I am not happy to answer, The followings are how I respond:

1) I keep quiet

2) I don't want to answer this question

3) ask the person --- " does this very important to your life "

4) This is not your business.

Having a healthy boundary is a psychological issue.

On Fri, Jan 15, 2010 at 1:59 AM, Lynna

<lynnanicholas@...>wrote:

>

>

> If this had happened several years ago, I would have been horrified. It

> would have felt horribly intrusive and it would have ripped the cover off of

> my carefully crafted mask of denial of " nobody can really tell there is

> anything wrong with me " . To have somebody ask to see my legs would have felt

> like having somebody ask to see the most vulnerable and shameful secret I

> carried.

>

> However, I am in a different place after a great deal of emotional healing.

> I see curiosity as potentially a very good thing and would potentially be

> honored that somebody would risk asking that question. So many able-bodied

> people are discomforted by disability and think it is a taboo subject. (I

> say " potentially " because it would depend on the circumstances. If a strange

> man on the street asked that question, I would turn and run! It would all

> depend on the context, on the level of relationship, and if I thought there

> would be good coming from it.)

>

> I see myself having alot of potential to help other people accept their own

> places of bodily shame by showing that I accept and love my own former

> places of shame. If I love and honor and take pride in my deformed legs,

> maybe that will help somebody else change in the way they see their flabby

> thighs, big nose, etc.

>

> Lynna

>

>

> > >

[Guest guest]

My close friend said one sentence and I left behind the man who asked to see my

legs in the church group.

My close friend said -------- why do you need to think about a " SHIT " ?

Caroline

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